Re: cammy F & Q? about NOT ROUNDING OUT?

[Guest guest]

Jo and everyone,

I am happy to hear that you are being so proactive about this!

I too want to agree with Sandy about them probably not fighting the

helmet vs. fighting wearing hats. Colin was exactly the same way

with hats but not the helmet at all (he was 9-almost 12 mos). Again,

not pushing the helmet, just giving you another example.

However I do have a question and this is not a direct attack at you

Sandy AT ALL. I have heard this before and I would like to get to

the real source of this statement:

" From what I have learned is that most children do not round

out in time. It might appear less severe due to them becoming

bigger, but the actual deformity doesn't go away. (Not for all

kids) "

I have read research/scientific papers (and I think it was the review

of all plagio lit up to 1998) and it stated that a *majority* of

children's heads do improve with time (2/3 or 66%) meaning 1/3 do not

improve or round out in a few yrs. Still, in my opinion it is of

course up to the parent whether or not they want to take that 1/3

chance.

I would like to know if it is written in a scientific paper or is it

just anecdotal when people say " most do not round out " in time.

Also, for a brachy shaped head, isn't it true that there will

*always* be some degree of permanent bone deformity - even WITH

helmet therapy? This probably depends on age of child too.

Again, this is not against anyone at all. I have heard this several

times and would just like to know and I'm sure that others here may

want to know as well in order to make informed decisions.

Thank you.

Sue

>

>

> Hello there,

>

> thanks to sandy, sue, sarah and Hannah and any other members who

> responded back to my last post.

>

> The article about cam came out and I shall scan it and add it to

the

> other ones on friday. We went along to the meeting at the hospital

> and they said how sorry they were blah blah...and the head of

> midwifery and the head of Peads both tried very hard to blame their

> teams, each other or anyone else...

>

> I found out on the internet just before the meeting that the

British

> Government via the NHS have clear guidelines for both health care

> workers and parents about the diagnosis and treatment of positional

> plagio and brachy and shock of shocks would you believe that they

> actually advocate the use of headbands or helmets for severe

> cases...finding this little piece of information has given me the

> leverage that I need to pursue a prosecution of the hospital for

> medical negligence. So I am waiting to hear what occurs next-I also

> found out that the only reason that my husband and I got to see the

> two Heads of Department is because we had already contacted the

media

> before hand- they were scared that I was intent on some sort of

> prosecution-which considering that the NHS guidelines were not

> followed at all I shall be.

>

> But on the positive side there is to be a meeting of all midwives

and

> Peads at the hospital to inform them of cams case and to give them

> dates for training days about positonal plagio and its managment.

The

> hospital is also getting together a parents information pack about

> the condition.

>

> In terms of Cam- well I still think should I band him, should i

not -

> but when I take into account that Cam fights me if I try to brush

his

> teeth, if I try put on his hat, if I try and give him just about

> anything that he does not want I think maybe I should not do this-I

> will post some clearer shots of his head for you all to look at and

I

> will welcome frank comments( will try and do this on Friday)

>

> I think in order to band your child you need to do it with 100

> percent conviction-and believe that it is the right thing to do and

> as I have been 50/50 for so long it seems wrong to base my decision

> on that degree of uncertainty..I hope I am making the right

decision-

> and these last few weeks when I wash cams hair i think wow-its so

> much better..maybe it will get better over more time

>

> Lastly one of the ladies who works at the hospital Patient Liason

> Service told me that it has only been from reading my letter that

she

> has realised that her grandson now 2 had brachy. She said though it

> has taken nearly two years for his skull to be practically normal

> looking so I hope that might be the same for cam-but I shall

> definately keep posting as the months go by

>

> Once again your support and advice is always needed

>

> jo and cam

[Guest guest]

Hi Sue

I think you raise an excellent point. This is also my understanding

of the literature (which is not very extensive in all honesty- both

the literature and my understanding!) that for a significant

proportion, there is headshape improvement over time. I also know

anecdotally that brachy can improve as I have a friend whose five

year old had a very flat head which rounded out over time. I'm sure

Jo will tell you herself that Cammy's head had rounded out since the

first pictures were taken, which is why the dilemma is so great,

given that there has been some not inconsiderable improvement. On

the other hand, only the other day I was out with the London helmet

club (!)and we saw a little boy of about 4/5 with significant brachy

and it did look noticeable- so clearly he had not rounded out on his

own.

My thoughts on the matter are that it is like playing the lottery-

you just don't know who will round out. I also think the odds are

stacked against plagio rounding out in particular when the baby has

tort, which prevents either their own natural repositioning or

aggressive repo by the parents, and also when it has become severe.

Once the skull base has shifted and the ears and jaw are misaligned,

it is much harder to correct full stop, even if cosmetically it

looks better after helmet treatment. That's why even with excellent

rounding (probably only 1-2mm left), my daughter Lucia's ears are

still a bit out.

There is a study going on at the moment at the Hopkins

university which is following untreated, repo and helmet babies.

Let's hope this can start to clarify which babies are the most

likely to round out naturally and which will not round out and need

helmets despite repo with bells on!!!

Thanks for bringing this up- it has also been on my mind that

doctors are not always wrong when they say 'it will round out on its

own'- but they are are not always right, either and are not

necessarily in a position to judge.

Hannah (mum to Lucia, London, UK)

Plagio, Cranio helmet, 4th July '04

> >

> >

> > Hello there,

> >

> > thanks to sandy, sue, sarah and Hannah and any other members who

> > responded back to my last post.

> >

> > The article about cam came out and I shall scan it and add it to

> the

> > other ones on friday. We went along to the meeting at the

hospital

> > and they said how sorry they were blah blah...and the head of

> > midwifery and the head of Peads both tried very hard to blame

their

> > teams, each other or anyone else...

> >

> > I found out on the internet just before the meeting that the

> British

> > Government via the NHS have clear guidelines for both health

care

> > workers and parents about the diagnosis and treatment of

positional

> > plagio and brachy and shock of shocks would you believe that

they

> > actually advocate the use of headbands or helmets for severe

> > cases...finding this little piece of information has given me

the

> > leverage that I need to pursue a prosecution of the hospital for

> > medical negligence. So I am waiting to hear what occurs next-I

also

> > found out that the only reason that my husband and I got to see

the

> > two Heads of Department is because we had already contacted the

> media

> > before hand- they were scared that I was intent on some sort of

> > prosecution-which considering that the NHS guidelines were not

> > followed at all I shall be.

> >

> > But on the positive side there is to be a meeting of all

midwives

> and

> > Peads at the hospital to inform them of cams case and to give

them

> > dates for training days about positonal plagio and its

managment.

> The

> > hospital is also getting together a parents information pack

about

> > the condition.

> >

> > In terms of Cam- well I still think should I band him, should i

> not -

> > but when I take into account that Cam fights me if I try to

brush

> his

> > teeth, if I try put on his hat, if I try and give him just about

> > anything that he does not want I think maybe I should not do

this-I

> > will post some clearer shots of his head for you all to look at

and

> I

> > will welcome frank comments( will try and do this on Friday)

> >

> > I think in order to band your child you need to do it with 100

> > percent conviction-and believe that it is the right thing to do

and

> > as I have been 50/50 for so long it seems wrong to base my

decision

> > on that degree of uncertainty..I hope I am making the right

> decision-

> > and these last few weeks when I wash cams hair i think wow-its

so

> > much better..maybe it will get better over more time

> >

> > Lastly one of the ladies who works at the hospital Patient

Liason

> > Service told me that it has only been from reading my letter

that

> she

> > has realised that her grandson now 2 had brachy. She said though

it

> > has taken nearly two years for his skull to be practically

normal

> > looking so I hope that might be the same for cam-but I shall

> > definately keep posting as the months go by

> >

> > Once again your support and advice is always needed

> >

> > jo and cam

[Guest guest]

Sue,

Thank you for your insight into the question of rounding out. As a

Repo mod, this question is near and dear to my heart, and I, too,

follow all recent studies/literature on the subject. I am eagerly

awaiting publication of a huge collection of data coming out of

Atlanta on correction achieved through banding, repositioning, and

also natural correction. I also saw an ongoing study at s

Hopkins mentioned in another reply, which is exciting news as well.

I wanted to reply and post some studies in the links/repositioning

and tummy time folder that may relate to this question of rounding

out. In each of these studies, repositioning or repo vs. banding

was examined, however, not " natural correction, " which I assume is

when the parents/caregiver takes no particular action as far a

repositioning goes. (If the link is more than one line long, you'll

need to copy and paste the entire link to your address bar to get

directed correctly)

Study: Active Counterpositioning or Orthotic Device to Treat

Positional Plagiocephaly (pub. Jul. 2001)

The purpose of this study was to compare these two management

regimens. Orthotic helmets have an outcome comparable to that of

active counterpositioning, although the management period is

approximately three times shorter.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=11482615 & dopt=Abstract

In the above study, it is worth noting that the " three times longer "

cited for repo results to equal banding/helmeting results is

approximately 60 weeks or so (!). Depending on age at onset of repo

trial, many babies could be well past the age of being young enough

for effective treatment with a band IF results achieved aren't

satisfactory.

Study: Nonsurgical, Nonorthotic Treatment of Occipital Plagiocephaly

(pub. Feb 1997)

Good article that compares corrective devices with positional

therapy. The results obtained in Phase 1 of this study strongly

indicate that repositioning neonates with occipital plagiocephaly

may produce improvement in cranial vault asymmetry very similar to

that reported with external orthotic treatment. Continued vigilance

is necessary to identify the patients who may not improve with

repositioning and stretching exercises; rather, these patients may

benefit from orthotic treatment.

<http://www.neurosurgery.org/journals/online_j/feb97/2-2-3.html >

The above study is one of the most commonly mentioned studies that

show that repo results produce comparable correction as banding or

helmet. Scrutiny of the data reveals that this is true for mild to

moderate cases only (severe cases not studied). In addition, repo'd

infants began repositioning at the much earlier 4 months old mark,

while banded/helmeted infants began at the much later age of 6

months old to achieve these similar results in mild/moderate cases.

Study: Posterior Plagiocephaly: Proactive Conservative Management

(pub. Jan. 1999)

We reviewed 39 cases of posterior plagiocephaly, 37 of which were

treated conservatively. Of these, 34 patients had a significant

improvement over the following year with sleep posture modification

and/or physiotherapy. While only eight cases returned to complete

normality, the remainder had deformities that were deemed mild by

both mothers and surgeons, and did not merit surgery.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=10343585 & dopt=Abstract

In the above study, 8 of 37 repositioning cases returned to a normal

headshape through conservative repositioning. It is worth noting

that the remainder of the cases were deemed " too mild for surgical

treatment " (apparently no banding/helmet option offerred.) No

measurements were provided in the study summary, but I would imagine

a parent would need to observe a great degree of remaining asymmetry

to pursue cranial vault surgery for treatment - it's difficult to

say what " mild " was defined as in this context.

Study: Helmet versus Nonhelmet Treatment in Nonsynostotic Positional

Posterior Plagiocephaly (pub. Nov. 2000)

Improvement was significantly better and faster in the helmet group

compared with nonhelmet treatment.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=11314498 & dopt=Abstract

The above study results show that helmeted babies improved faster

and also to a greater degree.

Also, I wanted to mention that brachy correction does indeed entail

a more challenging correction process. Once the head width has been

established prior to helmeting/banding (or repositioning for that

matter) it cannot be " squeezed " back into a more narrow shape.

Correction is achieved through holding the head width and directing

all growth outward toward the back of the head, in the hopes of

normalizing the cephalic ratio as much as possible. With plagio,

the head growth is directed to fill out 1/4 of the headshape at the

flattened area; with brachy, the entire back of the head is flat, so

that growth must be directed to fill out a much larger 1/2 of the

headshape (in layman's terms!) It could take many more growth

spurts or more time to achieve optimum results with brachy. You are

correct that the brachy headshape can get great improvement to the

cephalic ration, but that it rarely normalizes completely. (my own

daughter, Remy, is in this group - we aggressively repo'd her to

about an .84 cephalic ration, which is still about 1 1/2 standard

deviations from the norm.) Hopefully this could change if brachy is

recognized as a more difficult correction scenario and brachy babies

are referred for treatment as soon as possible in light of this fact

to arrest any increased head width asap:

Molding Helmet Therapy in the Treatment of Brachycephaly and

Plagiocephaly. (pub. Jan 2004)

Overall, the children with posterior plagiocephaly normalized their

head shapes; however, the head shapes of the children with

positional brachycephaly did not normalize despite statistically

significant improvements in their Cephalic Index. It is concluded

that molding helmet therapy is an effective treatment of position-

induced head shape abnormalities. Helmet therapy is more effective

in children with posterior positional plagiocephaly than in children

with positional brachycephaly.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=14704577 & dopt=Abstract

I also would like to see more studies on natural correction as well

as repositioning results. In addition, I would like to see a

standardization of what is mild, moderate, and severe, as well as

proper exploration of facial asymmetry/correction in these studies.

This is an excellent topic for discourse, and it is so important

that the group keep up to date on any published or ongoing studies

so that we can follow-up on the results.

Take care,

Christie (Mom to Repo'd Remy)

> >

> >

> > Hello there,

> >

> > thanks to sandy, sue, sarah and Hannah and any other members who

> > responded back to my last post.

> >

> > The article about cam came out and I shall scan it and add it to

> the

> > other ones on friday. We went along to the meeting at the

hospital

> > and they said how sorry they were blah blah...and the head of

> > midwifery and the head of Peads both tried very hard to blame

their

> > teams, each other or anyone else...

> >

> > I found out on the internet just before the meeting that the

> British

> > Government via the NHS have clear guidelines for both health

care

> > workers and parents about the diagnosis and treatment of

positional

> > plagio and brachy and shock of shocks would you believe that

they

> > actually advocate the use of headbands or helmets for severe

> > cases...finding this little piece of information has given me

the

> > leverage that I need to pursue a prosecution of the hospital for

> > medical negligence. So I am waiting to hear what occurs next-I

also

> > found out that the only reason that my husband and I got to see

the

> > two Heads of Department is because we had already contacted the

> media

> > before hand- they were scared that I was intent on some sort of

> > prosecution-which considering that the NHS guidelines were not

> > followed at all I shall be.

> >

> > But on the positive side there is to be a meeting of all

midwives

> and

> > Peads at the hospital to inform them of cams case and to give

them

> > dates for training days about positonal plagio and its

managment.

> The

> > hospital is also getting together a parents information pack

about

> > the condition.

> >

> > In terms of Cam- well I still think should I band him, should i

> not -

> > but when I take into account that Cam fights me if I try to

brush

> his

> > teeth, if I try put on his hat, if I try and give him just about

> > anything that he does not want I think maybe I should not do

this-I

> > will post some clearer shots of his head for you all to look at

and

> I

> > will welcome frank comments( will try and do this on Friday)

> >

> > I think in order to band your child you need to do it with 100

> > percent conviction-and believe that it is the right thing to do

and

> > as I have been 50/50 for so long it seems wrong to base my

decision

> > on that degree of uncertainty..I hope I am making the right

> decision-

> > and these last few weeks when I wash cams hair i think wow-its

so

> > much better..maybe it will get better over more time

> >

> > Lastly one of the ladies who works at the hospital Patient

Liason

> > Service told me that it has only been from reading my letter

that

> she

> > has realised that her grandson now 2 had brachy. She said though

it

> > has taken nearly two years for his skull to be practically

normal

> > looking so I hope that might be the same for cam-but I shall

> > definately keep posting as the months go by

> >

> > Once again your support and advice is always needed

> >

> > jo and cam

[Guest guest]

HI,

My son, (plagio/brachy) will tear his hats off in a matter of

seconds (or try to) ,

but does not try to take off his helmet. Also, my husband's brother

(now 20) could be

a walking poster boy for brachycephaly--which influenced me going

with the

helmet--his never corrected and it is actually quite severe and I did

not want to risk it

with . As far as I was concerned my decision was between 4-5

months of wearing

a helmet vs. a possible lifetime of a misshapen head and the

potential side effects

that could accompany it.

> >

> >

> > Hello there,

> >

> > thanks to sandy, sue, sarah and Hannah and any other members who

> > responded back to my last post.

> >

> > The article about cam came out and I shall scan it and add it to

> the

> > other ones on friday. We went along to the meeting at the

hospital

> > and they said how sorry they were blah blah...and the head of

> > midwifery and the head of Peads both tried very hard to blame

their

> > teams, each other or anyone else...

> >

> > I found out on the internet just before the meeting that the

> British

> > Government via the NHS have clear guidelines for both health care

> > workers and parents about the diagnosis and treatment of

positional

> > plagio and brachy and shock of shocks would you believe that they

> > actually advocate the use of headbands or helmets for severe

> > cases...finding this little piece of information has given me the

> > leverage that I need to pursue a prosecution of the hospital for

> > medical negligence. So I am waiting to hear what occurs next-I

also

> > found out that the only reason that my husband and I got to see

the

> > two Heads of Department is because we had already contacted the

> media

> > before hand- they were scared that I was intent on some sort of

> > prosecution-which considering that the NHS guidelines were not

> > followed at all I shall be.

> >

> > But on the positive side there is to be a meeting of all midwives

> and

> > Peads at the hospital to inform them of cams case and to give

them

> > dates for training days about positonal plagio and its managment.

> The

> > hospital is also getting together a parents information pack

about

> > the condition.

> >

> > In terms of Cam- well I still think should I band him, should i

> not -

> > but when I take into account that Cam fights me if I try to brush

> his

> > teeth, if I try put on his hat, if I try and give him just about

> > anything that he does not want I think maybe I should not do

this-I

> > will post some clearer shots of his head for you all to look at

and

> I

> > will welcome frank comments( will try and do this on Friday)

> >

> > I think in order to band your child you need to do it with 100

> > percent conviction-and believe that it is the right thing to do

and

> > as I have been 50/50 for so long it seems wrong to base my

decision

> > on that degree of uncertainty..I hope I am making the right

> decision-

> > and these last few weeks when I wash cams hair i think wow-its so

> > much better..maybe it will get better over more time

> >

> > Lastly one of the ladies who works at the hospital Patient Liason

> > Service told me that it has only been from reading my letter that

> she

> > has realised that her grandson now 2 had brachy. She said though

it

> > has taken nearly two years for his skull to be practically normal

> > looking so I hope that might be the same for cam-but I shall

> > definately keep posting as the months go by

> >

> > Once again your support and advice is always needed

> >

> > jo and cam